Sunday, December 6, 2009

A 5-year old boy is battling neuroblastoma, and his insurance company, HealthAmerica, has denied coverage for treatment (including denying an appeal), because the therapy recommended by his oncologist, MIBG, is considered by HealthAmerica to be "investigational/experimental".

Here is an email I received asking for help:

Five-year-old Kyler VanNocker was diagnosed with Neuroblastoma at the age of two-and-a-half. After enduring a year of treatment at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia that included a seven-month stay inpatient and complications that resulted in kidney failure as well as heart, lung and liver disease, Kyler finally went into remission in September 2008 and was able to experience “normal” childhood once more.

Neuroblastoma is a very aggressive type of cancer, however, and ten weeks ago, follow-up tests revealed Kyler’s cancer had returned. Part of what makes this particular cancer so relentless is that recurrent Neuroblastoma involves a different type of treatment protocol than an initial diagnosis, and Kyler’s oncologist determined that the only effective treatment option for Kyler is MIBG Therapy. MIBG Therapy is a clinical trial, much like the 3F8 treatment that Baby Billy is currently receiving. But please keep in mind that because there is no cure for Neuroblastoma, these clinical trials are the standard of care and the only chance these children have for survival. Kyler’s insurance carrier, HealthAmerica, does not seem to understand that, however, and despite the doctors’ recommendations, has denied coverage for the therapy because it is experimental and investigational in nature and is not yet approved by the Food and Drug Administration. Out-of-pocket expenses have left the VanNockers bankrupt. Without this procedure, Kyler’s only option is to receive Hospice Care and he will be sent home to die a slow and agonizing death.

The Plan:

Dena’s plan was triggered by the story of Noah Biorkman, a five-year-old who was diagnosed with Neuroblastoma in 2007 at the age of three, who went into remission, but then relapsed in September of 2008, the very same month that Kyler VanNocker went into remission.

When Noah’s mother, Diana Biorkman, posted an article on a CarePage site asking people to send Christmas cards to Noah so they could celebrate the holiday early due to Noah’s declining health, what followed was a FaceBook page, a television crew, and an outpouring of love – and Christmas cards arriving in their Michigan home. One day they received 64 cards. The next day, they received 80,000. Sadly, after a long battle with Neuroblastoma, Noah passed away on November 23rd, but not before receiving 1,000,000 Christmas cards!

The Tidal Wave:

Because this endeavor was so successful, Arms Wide Open is asking you for a repeat performance – but with a twist. Instead of sending a $2.99 Christmas card to Kyler, we are asking for each of you to donate $1.00. That’s it. It is amazing how connected this world has become because of the internet, and if you contribute $1.00 and pass on this email to everyone in your address book and they contribute $1.00, collectively, we can buy the VanNockers time and send them enough money to pay for Kyler’s next MIBG treatment. Changes need to be made to the healthcare system in the United States, and it is an atrocity when an insurance company puts a dollar amount on a child’s life, but this change with insurance companies and legislation and lawmakers is a slow process and, unfortunately, time is not a friend to any of these children battling Neuroblastoma. We know times are tough, but $1.00 is not a lot to ask for and when you add that to the other dollars, IT WILL SAVE A LIFE. Please look under your couch cushions, under the floor mats in your car, the bottom of your pocketbooks, and please tell everyone you know to do that as well, because every dime counts, every second counts, and every single one of you count. If this was your child, would Hospice be acceptable?

We didn’t think so. Give the gift of life this holiday season.

The Address: Paul and Maria VanNocker115 East Franklin AvenueEdgewater Park, New Jersey 08010

Thursday, November 5, 2009

RB: One of the things I have learned in the time that I have followed Zuska's blog, is that the more I peel away the layers on my own "bias onion", the more layers I find. At times it is a bit discouraging, but also enlightening, and at least I recognize my shortcomings and try to address them.

Recently, I peeled away another layer when Zuska and I had a conversation about the collection jars in her original post. I remarked that in my youth (when I was not so wise or mature), I did not see too many of these jars asking for donations, and when I did, I often felt that somehow the people who needed help were at fault. I thought that maybe they spent all their money unwisely, or that they did something wrong to be in that situation. Zuska replied that her experience was far different, and that she always felt the jars were "a fact of life, as what people had to do to get by."

Her email continued:

Do you think your earlier in life reaction to these was affected by the socioeconomic background of your upbringing? What I am trying to get at - if you were raised in relatively comfortable circumstances, with access to reasonable health insurance, and most people around you the same, then the appearance of such jars would seem like the "fault" of the people involved...different perspective if you are embedded in a community on the margins.

My thoughts and feelings have changed as I have matured. I realize how foolish my initial interpretations were, but given the context of my upbringing, they were not surprising. I now know how hard life can be, having lived a lot more of it. For myself, a long-term illness or severe health trauma would sap my financial resources in a heartbeat. It is scary to think that so many families are "that close" to the edge.

The jars themselves are objects -- they exist on their own, and their purpose is set. But how we interpret them can be very different, depending on the baggage we bring to the table.

What about you? Did you live in a community that saw a lot of these jars (or other fundraisers) when you were young? What did you think then? And has your perspective changed?

RB: ... in updating. The "silly season" has abated somewhat, so I'll be able to devote more time to the blog. My apologies that posting has been sporadic. Of course, I realize that my own trials and tribulations are minuscule compared to others, so I do feel a pang of guilt at being kept away. Updates should be more frequent. Please remember to submit any ideas, photos, feedback, etc. to beggar.nation at gmail.com

Tuesday, October 20, 2009

We're just getting started here, but hopefully we can gain some momentum, and show our elected leaders the paradox inherent in our healthcare system. Those who don't want it changed say we have the "greatest health care system in the world", yet there are increasing numbers of people who don't have insurance, can't afford insurance, or have a plan and have already maxed out the lifetime benefits.

How can you help? Pick one, or many:

1) Send us photos of any donation jars or donation notices in your area. Also, let us know at least what state the photo comes from, if not the city and state. If your GIMP skills are lacking, we will block out any last names in the photo. We'll also tag it with the state name, so elected officials can see a tally of how many of these are from their home state. I would also suggest leaving a donation, and perhaps a note pointing them to this blog.

2) Point as many people as you can to this blog, especially elected officials!

3) If there are people who are in this situation in your area, ask them if they'd like to come forward with their story. Since we cannot travel around the country doing this, we're relying on you to interview people, and submit the story to us. We'll then publish it on the blog.

4) Use the link from the previous post to contact your government officials, and ask them their thoughts on solving the problem of people not being able to afford healthcare. Submit the interviews to us, and we'll publish them.

Any and all photos, submissions, ideas, feedback, etc. can be sent to beggar.nation@gmail.com.

Monday, October 19, 2009

Maybe you'd like to tell your Senator or Congressperson just what you think about spaghetti dinners, car washes, and jars and jugs on fast food counters as a default system of funding medical expenses for our nation's citizens. If so, this website will be helpful in locating just exactly the right person with whom you want to share your well-chosen remarks:

You can find state governors and legislators as well as U.S. Senators and Congresspersons. Though if you, like me, live in Pennsylvania, where after months of stupid arguing and stonewalling, they have just barely managed to get their act together and pass a budget, you might be inclined to wonder how much good it will actually do to contact your state legislators. Nevertheless, contact them anyway.

Every person at birth should be issued a big plastic jug. When people become ill, they should tape their most endearing photos and a brief description of their illnesses to their plastic jugs. Then all they have to do is display the official containers at a local pizza shop - or something similar - and problem solved. More seriously ill people can apply to receive more big plastic jugs. I'm pretty sure that Sen. Coburn (R-OK) is planning to introduce this plan in response to "Obamacare" when the Senate returns from the district work period. I for one look forward to codifying our status as a nation of desperate beggers.

That comment really stuck with me. I'm sure we've all seen these types of containers at one place or another, and tossed some money into them here and there. After reading Robin's comment, I thought maybe I'd start photographing them whenever I run across them. Of course I'd need to have my camera with me - though now that I have a new iPhone (purchased as an MMD - Mom Management Device), it's much easier.

So herewith, my first offering of Big Plastic Jug Photos. If you are so inclined, take a photo of one in your neighborhood, and send it to me by email. Be sure to include a bit of info - general geographic location, what type of establishment it was found in.

My first field sighting was in my hometown, at the post office community bulletin board:

The next one came on another trip home. Just off the Bedford exit of the Pennsylvania turnpike is a combination gas station/conveniencestore/MdDonald's. It was on the counter of the MdDonald's that I found this big plastic jar.

The last one in the current batch of offerings was found in a small convenience store about halfway between my hometown and Point Marion, PA, that used to be known as the "9 to 9 store" because of its hours. I did not capture (entirely) in this photo the picture of the sweet little toddler with her lacy suncap and strawberry pink dress because I didn't have the heart to plaster her photo all over my blog. Nor did I have the heart to ask the person behind the counter exactly why we were being asked to purchase ribbons on poor Callie's behalf. I guessed cancer, or some similar devastating childhood misfortune, along with the usual story of parents working at low-wage jobs that did not provide insurance.

So there you have it. My first installment. I plan to keep taking pictures if I can, and I encourage you to as well. Even better, contact your senator and/or congressperson, and ask him or her if they think this is how those struggling on the margins of our society ought to be expected to get by when medical disaster strikes. Do we really want to be a Blanche DuBois nation, depending upon the kindness of strangers to pick up the tab for society's least fortunate?

Our Mission

We are highly sympathetic to those who cannot afford health care costs. The aim of this blog is to bring attention to the fact that there are many people in similar situations, who need to rely on others to fill the gaps. Some people may find the term "beggar" to be a negative, but we do not mean it that way. In fact, this page sums it up nicely: "The presence of beggars can be indicative of larger socio-political issues in a given region, culture or time." If a photo was taken of your jar, and you'd like it removed, please let us know (beggar.nation at gmail.com).